Undiagnosed Autoimmune Disease

@dstone501957
Your elevated blood levels in 2023 may be tied to the infection (Covid?) since the levels normalized.

How did your orthopedic doctor determine a damaged vocal cord before surgery? That is usually tested by an ENT through specialized testing. Did the orthopedic surgeon see something about the vocal cord on an MRI (severed or inflamed vocal cord)?

Where is your pain primarily an issue? Is it in your spine/joints? When did your pain symptoms start and did your cervical spine surgery help alleviate any of your pre-surgery symptoms?

My left vocal cord was found to be paralyzed from imaging in 10 day prior to surgery. After seeing an ENT, the Orthopedic Surgeon was cleared to go anterior (through front). Literally 15 min prior to being wheeled into OR, the Surgeon decided to go posterior. He did not want to risk damaging my right vocal cords. Knowing what I know, I would probably not gone through with it. Posterior Cervical Surgery is one of the top 5 most painful surgeries to recover from.

I know SBF is ruled out and the Neurologist kept saying she saw signs of early stage Parkinson. She has never bothered to contact me to discuss the Skin Biopsy results. I called up and asked for a the report to be placed in the portal. This was actually the 2nd attempt with skin biopsy. The first skin sample was rejected due to being sent to lab in an expired fixative (preserving solutioon). Sounds like we had similar Surgery. I will get back.later. I have a lot of horror stories from my 2 plus year ordeal.

Does your daughter have mast cell activation syndrome or autoimmune ?
How long has she been on Xolair inj?

Yikes! You asked for suggestions and I have one. Low Dose Naltrexone. It can "reboot" the immune system. There's a lot of stuff on line. Read about it first. Very few, if any side effects.

Some additional information on my Cervical Spinal Surgery:

I am a 68-year-old male. Surgery was performed on November 20, 2024

My Cervical Spine Surgery ended up going in posterior. It was supposed to be anterior, but Orthopedic Surgeon changed last minute due to not wanting to damage my right vocal cord.

OP Notes:
1)Preoperative/Postop Diagnosis
2)Cervical myelopathy
3)Stenosis, cervical
4)Vocal cord paralysis, left side, noted on preop workup

Procedure(s)
1)C4-C7 PSIF
2)C5 laminectomy with 4/5 medical facetectomy/ foraminotomy
3)C6 laminectomy with 5/6 medial facetectomy/ foraminotomy
4)Repair of dura with fascial patch and 5-0 prolene suture
5)Use of intraoperative ultrasound with interpretation
6)Use of intraoperative fluoroscopy with interpretation
7)Application of Gardner-Wells tongs
8)Use of intraoperative neuro monitoring

From my point of view my recovery has not gone to well. I have had 3 follow-ups with the Orthopedic Surgeon with all new x-ray imaging the day of; 6-week, 12 week and 6 months. I was still having considerable pain at 12 weeks, but no more pain meds offered. Orthopedic Surgeon felt everything was properly aligned in place and healing as expected. Not due to see him until a 12-month follow-up. Over the last 30 or so days, I have been experiencing extreme weakness in both arms (mainly shoulders) and both legs (mainly both thighs). I am still unable to sleep in bed; I will experience head pain if I do. Continue to sleep in a recliner, most of my head pain is from trying to turn head to the left or right, driving a car is difficult.

What has been your experience with your surgery? Did you have an Orthopedic Surgeon or Neurosurgeon? I ham hearing better success and less complications with a Neurosurgeon.

As to the "undiagnosed autoimmune disease" I would vote for Sjogren's Disease. I know it likes to distroy small fibers. It did mine. I presume you had a punch skin biopsy to diagnose the Small Fiber Neuropathy, as it is the Gold Standard. Diagnosing would be a blood test to look for thr right antibodies for Sjogren's.

Thank you for your suggestion! I will educate myself on it.

SFB was an initial diagnosis with an underlying autoimmune disease. Skin test ruled out SBF
Neurelogist also thought early stage Parkinson. Almost all of the more obvious autoimmune have been ruled out. No one wants to take a deeper dive to find cause of ear pain or chills. That is why I am looking into the Undiagnosed Disease Network.

@dstone501957
I’m sorry you are suffering. I am in my mid 50s and can relate with chronic pain, weakness, etc.

You may want to get a 2nd opinion from a neurosurgeon if you had your surgery done by an orthopedic spine surgeon. My ACDF cervical surgery on C5-C6 and C6-C7 was done by an orthopedic surgeon.

I also have cervical myelopathy spinal cord compression injury like you. How long did you have symptoms prior to your surgery and what were your pre-surgery symptoms? I was misdiagnosed for over 5 years and have some permanent injury to my spinal cord and some residual weakness in shoulders/arms due to long term flattening compression injury of my spinal cord. Before my surgeries in 2022 (C5-C6) and C6-C7 (2025), I had daily headaches, tinnitus, balance issues, neck/shoulder pain, arm/hand weakness, leg heaviness (felt like wearing cement boots when walking) and bladder control issues. I kept dropping things and my handwriting was noticeably worse. Many symptoms improved after my surgeries.

It seems that something injured your vocal cord prior to your surgery and it would be good to know what caused the paralysis. You should have your other vocal cord checked/tested by the ENT to ensure there is a baseline and ongoing monitoring to see if you can narrow down the cause of the paralysis and prevent that happening to your other vocal cord. If the surgeon knew you had a pre-surgery vocal cord paralysis, a last minute change to posterior surgical approach wouldn’t have been necessary. The surgeon should have prepared you for posterior surgery which is much more painful than ACDF due to cutting muscles (I had lumbar posterior open surgery L3-L5 in 2024 and can relate with the extreme pain). I’m suspicious about this surgeon. They should not dismiss or disregard your pain and upper/lower body weakness!

You really should get an urgent MRI of your brain and cervical spine to make sure you do not have any issues with your surgery or new compression of spinal cord/nerve roots, CSF leak, or inflammation. This would not show up on X-ray. Your surgical notes indicate there was a tear in your dura which can leak cerebral spinal fluid. You need to know if the tear of the dura occurred during the surgery or if the tear was due to compression and friction of dura by a bone spur/osteophyte (what caused the tear and need for patch repair). This could be behind your symptoms. If you need to go to the ER to get timely attention to your concerning symptoms, you should do this. I would do this if ai was you. Waiting to get in to see a new neurosurgeon will take too long to see if you have a CSF leak putting pressure on your spinal cord/nerve roots/base of brain.

I’m not sure what mast cell activation syndrome is, but my daughter has an autoimmune condition as well and has multiple anaphylactic allergies - she is also allergic to her own sweat so has to be careful not to break out in a sweat which can trigger hives (her hives can be triggered by anxiety and stress too), which in turn triggers anaphylaxis. She cannot even be in the same room with latex (e.g., balloons), strawberries, kiwis or pineapples. On the whole she literally walks an allergy landmine. She needs to carry two Epi Pens with her at all times.

She has been taking Xolair injections once a month in a clinic setting for about four years now. It has helped with her hives. Also, she was allergic to almonds and coconut among her long list of allergies, but after a few Xolair injections she has been able to eat first almonds, and then coconut (she was given small portions at the clinic, under observation). She still is allergic to other tree nuts. It is hoped that in time she will be able to tolerate other items on her long list.

Xolair injections are a work in progress for her, but they definitely are helping. Fortunately for her, her health plan from her workplace covers the injections.